Ten years on

[Jaded'n'faded]

I must admit, whenever my mum was given antibiotics for an infection and even when they were fixing her broken hip in the hospital, my thoughts were always, 'What for?'

I could have waved her Living Will (Advance Directive) at them which stipulated no more medical treatment... but I didn't. I did get a 'no more hospital' agreement with the GP but these decisions are very hard, guilt-inducing and heart-rending.

I don't think there are any 'one size fits all' answers - every case is different.

 

[JaxG]

That‘s the thing though, my husband is much more able than yours. I can leave him alone for several hours and in fact I go out every day. He chooses what to eat (vegetarian) from the ready meals in the fridge and still prepares them for himself. He is still playing bridge both at the club and online. There are lots of things he can’t do but after 10 years, his progress is slow. I couldn’t in any way get him into respite because he simply would refuse, not understanding that respite is to benefit me.

He still manages his meds, though prescriptions are a different matter. He takes the old dog for two walks a day.

I believe that my husband’s cardiac issues are far worse than the dementia and our GP and I often have discussions about the situation. This being the case, he couldn’t ignore the chance to improve things for my husband and I understand that he had a responsibility to offer the new drug.

I have to say he has been my greatest support over the years and I can talk about certain things with him that I would never say to anyone else. He is happy to make time for me to have discussions with him about my husband’s condition without bothering about things like POA. I also know that he took my opinion into account.

Generally, my situation is very different to most others on the forum. That doesn’t make years of caring any less tiring and the thought of more of the say

I feel for you, caring for the PWD, especially when their behaviour means that you can no longer love them, is impossibly tough, it dismantles almost every part of your life. The deterioration does seem to be very gradual, but this must raise a lot of difficult feelings for you. As harsh as it sounds, for me the deterioration over the last few months has been a relief, I can imagine that I will have a life again. My husband can walk and talk, but has no independent functioning, no meaningful quality of life, and the verbal and physical aggression over the last 6 years has destroyed any feelings I once had. I see in your later post that you are beginning to recover some quality of life, I hope this continues and your dogs continue to give you the joy you deserve. xx

 

[Lawson58]

I feel for you, caring for the PWD, especially when their behaviour means that you can no longer love them, is impossibly tough, it dismantles almost every part of your life. The deterioration does seem to be very gradual, but this must raise a lot of difficult feelings for you. As harsh as it sounds, for me the deterioration over the last few months has been a relief, I can imagine that I will have a life again. My husband can walk and talk, but has no independent functioning, no meaningful quality of life, and the verbal and physical aggression over the last 6 years has destroyed any feelings I once had. I see in your later post that you are beginning to recover some quality of life, I hope this continues and your dogs continue to give you the joy you deserve. xx

I have had similar feelings over the years, especially as none of the doctors seemed to think OH would survive more than 2-3 years after his cardiac arrest and he defied them all. I haven’t had to live with physical aggression and verbal abuse has decreased greatly in the last few years and for that I’m grateful. I think that physical aggression in a person with dementia must be so hard to deal with.

I think our marriage was destroyed in the years prior to assessment as he was so paranoid it was really difficult. We had discussed separation but financially it wasn’t an option. I really wished we had because I would have survived somehow. I wish non carers could have some insight into how destructive this disease is.

I get cranky when I see advertisements for care homes where everybody looks like they’re on a holiday jaunt.

 

[JaxG]

I think our marriage was destroyed in the years prior to assessment as he was so paranoid it was really difficult. We had discussed separation but financially it wasn’t an option. I really wished we had because I would have survived somehow. I wish non carers could have some insight into how destructive this disease is.

I get cranky when I see advertisements for care homes where everybody looks like they’re on a holiday jaunt.

I feel the same. 4 years ago I had decided to leave, then lockdown hit and this gave me the time to understand that my husband may be developing dementia. By this time the emotional damage had been done but I thought I might feel better if the abuse could be explained by a diagnosis of dementia. I did not regain the feelings I once had for him, and it has sadly helped me to understand that some of these aggressive, abusive traits have always been there. Like you, financially leaving was always going to be difficult - my OH had run up huge debts - he told me that half the debts were mine even though they were caused by his failed business. So I stayed and I wait to get my life back.
And as for Alzheimer's adverts - I want to scream!!!

 

[Lawson58]

I feel the same. 4 years ago I had decided to leave, then lockdown hit and this gave me the time to understand that my husband may be developing dementia. By this time the emotional damage had been done but I thought I might feel better if the abuse could be explained by a diagnosis of dementia. I did not regain the feelings I once had for him, and it has sadly helped me to understand that some of these aggressive, abusive traits have always been there. Like you, financially leaving was always going to be difficult - my OH had run up huge debts - he told me that half the debts were mine even though they were caused by his failed business. So I stayed and I wait to get my life back.
And as for Alzheimer's adverts - I want to scream!!!

When my husband was first diagnosed, I attended an expo run by Dementia Australia and the theme was ‘Living Well with Dementia. Even though I was new to dementia apart from OH, I sat there watching videos of PWD who looked normal and doing all sorts of things and I felt very confused.

I have had ten years to think about it and two things struck me. The first was that these were people in the fairly early stages who still had a level of independence. The second was that these people were experts at hosting mode and of course, we saw the good things and not the day to day of realities of their other lives. And I would love to know how many takes they did and how much editing was required.

The cynic in me wants to know why? Are we all so desperate that we will believe everything we are told about anything and everything? How do we marry up what we have experienced with our PWD and what is shown on TV and events such as that expo?

Hmmmmmm!

 

[Chizz]

No, the "living well" with dementia idea is meant well.
When a PWD is in early stages, these adverts, programmes, courses, etc show that by taking a PWD to participate in various activities - such as the "men's shed", the memory singers, the memory cafes, walking trips, museum of childhood, etc - what passes for "normality" can be stretched out and prolonged.
Because, as one knows that phase of a PWD being able to do those things is limited. It then ceases, and the "living well" with dementia ends and becomes irrelevant, in the past, forgotten. Activities are restricted or confined to what can be done in your living room. And the period of a PWD not being able to do almost anything begins and these bleak times can last for years.
Although @Lawson58 you have said you don't like the "living well" as a "pretence" of reality, you have what seems to me to be a high functioning PWD, and fortunately for you, so far, you haven't reached the period where your PWD just stays in a bed or a chair all day, every every, every day, as unfortunately I have come to. I hope you never do, I wish nobody ever did, but that wish is as pointless as the living well idea.
It's being so cheerful that keeps me going!

 

[Lawson58]

No, the "living well" with dementia idea is meant well.
When a PWD is in early stages, these adverts, programmes, courses, etc show that by taking a PWD to participate in various activities - such as the "men's shed", the memory singers, the memory cafes, walking trips, museum of childhood, etc - what passes for "normality" can be stretched out and prolonged.
Because, as one knows that phase of a PWD being able to do those things is limited. It then ceases, and the "living well" with dementia ends and becomes irrelevant, in the past, forgotten. Activities are restricted or confined to what can be done in your living room. And the period of a PWD not being able to do almost anything begins and these bleak times can last for years.
Although @Lawson58 you have said you don't like the "living well" as a "pretence" of reality, you have what seems to me to be a high functioning PWD, and fortunately for you, so far, you haven't reached the period where your PWD just stays in a bed or a chair all day, every every, every day, as unfortunately I have come to. I hope you never do, I wish nobody ever did, but that wish is as pointless as the living well idea.
It's being so cheerful that keeps me going!

I understand all of that though I question whether it stretches the earlier phase out because it’s a bit like donepezil. People hope that it’s slowing the symptoms down but there are studies that show that it’s questionable as to how much it achieves.

Yes my husband was high functioning but then he doesn’t actually have Alzheimer’s and is very different to what is usually seen in those who do. His cognitive functioning was often very patchy and erratic and may have been a sign of whatever type of dementia he does have. He has never been involved in men’s shed, memory cafes or anything similar and his bridge game was something he had been doing all his life.

In addition to that, his family had been bookmakers and he helped out in the betting shop from when he was young so maths and odds was a normal part of his thinking. Card games are all about odds and mathematical distribution so all lovely familiar stuff. He also had a reasonable short term memory which is essential to remembering which cards have been played and that is probably the key. The first 30-35 years of his life are becoming a mystery to him so he is quite the reverse of Alzheimer’s people.

The thing is that the expo that I had mentioned earlier was for carers, many of who were caring for people just like your PWD and much further down the track than I was. I didn’t quite buy it and I can’t imagine how they would have either.

If the organisers thought to convince them about this concept, their targeting was totally off. That is a pity because in the early days, I attended their info sessions which were very helpful as was their helpline.

 

[JaxG]

'Living Well with Dementia' is a phrase that I find utterly confusing, and insulting. The PWD has been given a diagnosis that means the brain and all that it controls will deteriorate day by day, that even by the time they are diagnosed they will already be in the moderate stage and their lives severely impacted. My husband was never interested in Men's Sheds or the Dementia Cafes, he was already struggling to follow conversations, and the 'Living Well' for either of us was blown out of the water by his increasing aggression, both verbal and physical. There has been nothing positive about this experience, and personally I feel these 'catch phrases' reflect the way the whole disease is treated. Dementia is categorised as a mental health issue, not the disease that it is. When someone is diagnosed they are sent home with leaflets and some medication and their carers are left to fight for every bit of help available. There may be some sufferers who do manage to 'live well' for a period of time, but for so many this is just an attempt to whitewash their feelings and experiences.

 

[jennifer1967]

when i told the bank he had dementia, she went through the questions to see which level of support he would need. one of the questions was about mental illness which i said he hasnt got mental illness. we have joint account and i do have poa as well but even they get it wrong.

 

[Silversally]

“Living hell with Dementia” is more appropriate. Sorry, bad day today.🤯

 

[DeeCee7]

'Living Well with Dementia' is a phrase that I find utterly confusing, and insulting. The PWD has been given a diagnosis that means the brain and all that it controls will deteriorate day by day, that even by the time they are diagnosed they will already be in the moderate stage and their lives severely impacted. My husband was never interested in Men's Sheds or the Dementia Cafes, he was already struggling to follow conversations, and the 'Living Well' for either of us was blown out of the water by his increasing aggression, both verbal and physical. There has been nothing positive about this experience, and personally I feel these 'catch phrases' reflect the way the whole disease is treated. Dementia is categorised as a mental health issue, not the disease that it is. When someone is diagnosed they are sent home with leaflets and some medication and their carers are left to fight for every bit of help available. There may be some sufferers who do manage to 'live well' for a period of time, but for so many this is just an attempt to whitewash their feelings and experiences.

I quite agree @JaxG it’s a terminal disease, plain and simple. And I am equally concerned about the declining health of carers, who can reach such depths of despair and anguish, living with verbal and/or physical abuse, and often reduced to taking medication themselves to help cope with their unhappy lives. It’s utterly wrong and heartbreaking.

 

[Chizz]

I quite agree @JaxG it’s a terminal disease, plain and simple. And I am equally concerned about the declining health of carers, who can reach such depths of despair and anguish, living with verbal and/or physical abuse, and often reduced to taking medication themselves to help cope with their unhappy lives. It’s utterly wrong and heartbreaking.

Yes @DeeCee7, but when a PWD is given a diagnosis by way of conformation and sometimes it is estimated what kind of dementia - Alz's, mixed, FLD, LBD, etc etc it is, I believe, NEVER stated that it - the dementia - is a terminal disease from which, it is most likely, the PWD will die (if something else doesn't get them in the meantime). Due to impaired understanding I can understand why this is not said to the PWD (although it probably should be if we're being honest as a society). However, I think it should be said to the carer, especially if the carer is a member of the family.
Just my thoughts.

So when some form of assisted dying is discussed - there was an article in Daily Telegraph on 14th March where the journalist was disagreeing with "MAID" as in Canada, it was on The World at One, Radio 4 today lunchtime, and the system used in The Netherlands, maybe a possible Bill to be introduced into The House of Commons this side of an election - it is never stated that Dementia - in all and every form - is a terminal illness - probably because the only form of assisted dying that is ever contemplated is where the "sufferer" is the one making the choice/request and a PWD can't.

Nobody knows the number of family carers for PWD there are, nor how their health is, nor how they're getting by, and there is probably no way of knowing.

 

[Scarlet Lady]

Nobody knows the number of family carers for PWD there are, nor how their health is, nor how they're getting by, and there is probably no way of knowing.

There might be @Chizz , if anybody was prepared to do anything about it. But nobody will because it’s all about money and frankly, the subject has become so enormous that no government in the world wants to tackle it. Some do better than others, sadly, the U.K. as usual lags well behind. Unless we get governments that value the lives of the people they purport to govern, nothing will improve.

 

[Lostinthisdesert]

I wish there could be a national conversation about dementia and other conditions which cause loss of mental capacity. An honest and open discussion. Surely the various societies could facilitate this rather than the mealy mouthed 'living well with dementia ' rubbish.

 

[Lawson58]

There might be @Chizz , if anybody was prepared to do anything about it. But nobody will because it’s all about money and frankly, the subject has become so enormous that no government in the world wants to tackle it. Some do better than others, sadly, the U.K. as usual lags well behind. Unless we get governments that value the lives of the people they purport to govern, nothing will improve.

Australia has just given aged care workers and visiting carers a huge pay rise, up to 28% for personal carers and lesser amounts for others depending on what their role is. This was on top of an across the board pay rise for all carers last year so hoping this will encourage more people to enter the industry. Can’t imagine the care homes are going to be happy but most of us oldies think it’s a good move.

 

[Lawson58]

Yes @DeeCee7, but when a PWD is given a diagnosis by way of conformation and sometimes it is estimated what kind of dementia - Alz's, mixed, FLD, LBD, etc etc it is, I believe, NEVER stated that it - the dementia - is a terminal disease from which, it is most likely, the PWD will die (if something else doesn't get them in the meantime). Due to impaired understanding I can understand why this is not said to the PWD (although it probably should be if we're being honest as a society). However, I think it should be said to the carer, especially if the carer is a member of the family.
Just my thoughts.

So when some form of assisted dying is discussed - there was an article in Daily Telegraph on 14th March where the journalist was disagreeing with "MAID" as in Canada, it was on The World at One, Radio 4 today lunchtime, and the system used in The Netherlands, maybe a possible Bill to be introduced into The House of Commons this side of an election - it is never stated that Dementia - in all and every form - is a terminal illness - probably because the only form of assisted dying that is ever contemplated is where the "sufferer" is the one making the choice/request and a PWD can't.

Nobody knows the number of family carers for PWD there are, nor how their health is, nor how they're getting by, and there is probably no way of knowing.

When I was arranging my Advanced Care Directive, the hardest question to deal with was what would I want done if I developed dementia. Of course, assisted dying was out of the question but it was hard to decide at what stage would I want a DNR come into play.

I have read some of the MAID stuff and in trying to be definitive, they have made it complex and I suspect left a few loopholes.

 

[Lawson58]

I had to take old dog to the vet’s today. She has had arthritis for some years and has regular injections to help her be more comfortable.

She had some other problems recently so has had some other tests and it’s going to take a few days to get the results back. Following a very thoughtful discussion with the vet, we have started our old girl on medication for dementia and it’s going to take about four weeks for it to kick in.

So thIngs are a bit up In the air at the moment and I hope the tests are OK for her. I think at her age, her anxiety when she goes to the vet and the dementia that I would be reluctant to put her through any prolonged harsh treatment.

Oh, the joys of getting old!

 

[JaxG]

Oh that's so sad. My much loved spaniel developed dementia and I watched him deteriorate over several years. He developed urinary incontinence so he wore a nappy, he suffered from sundowning but it was only when he started pooing in the house and walking through it that I had him put down - it broke my heart and still does. I have a cushion with his face on and I still cry regularly. He was very empathetic - he was with me through cancer treatment and I was with him when he became seriously ill. Dogs can play such an important part in our lives - my little dog now is a life saver, my therapy and he alone makes getting up in the morning worth it. I am utterly exhausted looking after my OH. He can do nothing, he sleeps all day, I am just a servant - cooking, cleaning, washing, shopping, helping him to dress and eat. There is no conversation, no friendship or companionship, just the loneliest place. Good luck with your dog, I hope she rallies and you have her for much longer in your life.

 

[sdmhred]

What medication do they use for doggy dementia?

 

[Chizz]

I am utterly exhausted looking after my OH. He can do nothing, he sleeps all day, I am just a servant - cooking, cleaning, washing, shopping, helping him to dress and eat. There is no conversation, no friendship or companionship, just the loneliest place.

Hi @JaxG
Been there, as have many, so really feel for you
XX